Monday, October 16, 2017

Navigating the MS Internet: Useful Websites and Some Words of Caution

Back when I was first diagnosed in 2003, the Internet was a far different place. Facebook and Twitter had yet to be invented, and Apple’s first iPhone was still four years away. As a newly minted MSer, I plunged headlong into what now seems like a relatively barren virtual landscape seeking information about the disease and interaction with other patients dealing with it. I found some MS web forums (often called bulletin boards back then), and a handful of MS themed blogs, along with some general medical information sites that made some mention of multiple sclerosis.

Flash forward 14+ years, and, my, what a difference. For better or worse, Facebook has become the giant elephant in the room, the amount of MS blogs has exploded, and informational resources are plentiful. What follows is what I hope will be a handy-dandy guide to getting the most out of the modern MS Internet, along with some cautionary words about some of the dodgy information (or misinformation) that is now so easy to come across.

For those like me, hungering for the latest and greatest in MS news, it’s much easier to have such tidbits find you rather than you find them. How to achieve such Internet wizardry? Easy, just sign up for news alerts and daily newsletters from any number of reliable MS sites. One of the most effective ways of having a wide variety of MS news – from puff pieces to hard research – delivered straight to your email inbox is to sign up for Google news alerts (click here). I have my alerts set up to flag any news items including the words “multiple sclerosis,” and I get a daily email compilation of MS-related articles from around the world delivered directly to me courtesy the Google Internet mystics. Easy peasy lemon squeezy.

Other sites that provide reliable MS information and allow you to sign up for email newsletters include Multiple Sclerosis News Today (click here), and MS Views and News (click here). For those who enjoy a deep dive into the latest MS research, there’s The MS Research Blog (click here), which is published by the MS neurologists and researchers at the Barts and London medical school in Great Britain. Simply sign up in the “Follow By Email” space provided on the blog, and you’ll get their posts right to you on a daily basis.

Other sites that provide a wealth of MS info and resources include: the National Multiple Sclerosis Society (click here), the Multiple Sclerosis Association of America (which provides not only info but material help for those MSers in financial need – click here), the MS international Federation (click here), Healthline.com (click here), and ActiveMSers (provides info and motivation about staying physically and intellectually active despite having MS – click here).

For those seeking interaction with other MSers, there are a wide variety of online MS communities that offer excellent venues for information sharing and patient to patient camaraderie. Most of these are moderated by folks with medical backgrounds, and they don’t discourage posts from people with differing viewpoints, unlike many of the dedicated MS groups on Facebook – but more on that later. Among the oldest of these online communities is the venerable MSWorld (click here), which was one of the first MS forums I discovered over 14 years ago when I was first diagnosed. The site has become much more multifaceted in the intervening years, and I’d encourage all patients to give it the once over twice. Other vibrant online MS communities include Shift.ms (click here), the NMSS’s MS Connections (click here), and My Counterpane (click here), a unique MS community that encourages members to track their moods, post videos, and provides fodder for thought and conversation. ThisIsMS is another older forum that is a great place to discuss MS research and treatment protocols, as well as general MS topics (click here). The British MS Society’s forums are another welcoming venue (click here).

For those looking for an MS-specific social networking app for smartphones and tablets, there’s Healthline’s MS Buddy (Android-click here, Apple-click here), which will match you up with a different fellow MSer every day, with whom you can chat, exchange experiences and information, and hopefully become friends. Healthline is currently in the process of expanding the features of the app, and it’s well worth the download.

iConquerMS (click here) allows MS patients to participate in a crowdsourcing research project. By answering a series of surveys, patients contribute to a vast database of MS related information that can be tapped by MS researchers worldwide. This is an extremely important initiative, and the site offers benefits to those who participate. I strongly urge all Wheelchair Kamikaze readers to become members of the iConquerMS community.

Back when I started Wheelchair Kamikaze in 2009, there were already quite a few MS blogs taking their place in the blogosphere (without doubt one of the ugliest words in the English language), but now there are so many it’s almost impossible to keep up. Happily, the site MultipleSclerosis.net (click here) features articles by many popular MS Bloggers and writers, yours truly included. You’ll find a wide variety of articles and info on MS.net, from the latest MS research to highly personal essays, all written by patients with MS or their caregivers. Honestly, this site is a must read and can keep you busy for hours each day.

Okay, now let’s discuss Facebook, that multi-tentacled entity intent on world domination that for many people is the Internet. As you may have guessed, I’m not a big fan of Facebook, for a plethora of reasons. Of course, I do understand Facebook’s appeal and its value as a place for keeping in touch with old friends and meeting new ones, engaging in social tribalism, reveling in confirmation bias, reading totally fictitious news items presented as fact, and taking online personality tests. BTW, I’m an ultra-intuitive old soul super genius with an encyclopedic knowledge of art, history, geography, literature, science, grammar, vocabulary, and spellling. Also, my spirit animal is the Australian Pimple Beast and the color of my aura is purple. Oh, and Judge Judy is my celebrity soulmate.

When it comes to multiple sclerosis, though, my real beef with Facebook is the insane amount of misinformation, disinformation, and hyperbole that gets passed around as fact in many if not most MS Facebook groups, particularly those devoted to one treatment protocol or another. This is especially true in groups dedicated to treatments that are considered alternative, such as HSCT, CCSVI, the Coimbra protocol, etc. I don’t mean to disparage any of these treatments, as I believe it’s vitally important to keep an open mind when it comes to new and different MS treatment approaches. I am in fact a big proponent of HSCT, for properly selected patients, and have written extensively on the subject (click here).

The problem with much of the MS info on Facebook lies predominantly in the fact that most if not all of the treatment related FB groups are founded and moderated by folks who believe in their chosen treatments with an evangelical zeal, or, more nefariously, by organizations offering such treatments for mucho dinero. Quite often, the keepers of these groups don’t countenance any sort of dissenting viewpoint or set of facts that don’t jibe with the party line, and actively discourage or even ban those with the temerity to point out glaring errors in fact and reason.

I recently had an email discussion with Dave Bexfield, an MS Activist who maintains the ActiveMSers website, about the problems we’ve both encountered trying to inject some sort of objectivity into these groups. His experiences closely mirror mine, with the added dimension that Dave has undergone HSCT treatment himself. He offered the following account of his experience trying to tell his story on some of the HSCT Facebook groups. I’m sharing Dave’s words with his permission:

“Sadly, it's virtually impossible to counter MS misinformation on Facebook, and HSCT—a treatment that saved my life in 2010, but ultimately did not stop the progression of my disease – is a perfect example. Rational, balanced discussions are drowned out by cheerleaders armed with "facts" that are little more than personal opinion. It's gotten so bad that MS researchers have complained to me personally that while some of the info on these fan sites is correct and informative, as much as a third is just wrong, outdated or even fabricated. What to do? I've finally stopped trying to correct people on social media to avoid the inevitable flame wars. It was unpleasant wearing the "black hat" of truth and playing the role of a human piñata.”

For those interested in learning more about Dave’s experience with HSCT, shift.MS has published a series of short video interviews with him on the subject (click here). Highly recommended viewing for anybody investigating this form of treatment.

Suffice it to say, my experiences with a variety of Facebook treatment groups are quite similar to those of Dave’s. My best advice would be that if you find yourself on a treatment themed Facebook group and see nothing but glowing anecdotal reports and only “facts” that back up these claims, colossal alarm bells should go off in your head. It’s vitally important that you actively seek alternative viewpoints to get a complete picture of whatever treatment you are investigating. Facebook may be a good starting point but should most certainly not be your only source of MS information, or any information for that matter. Always remember, you can learn much more from people you don’t agree with than from those you do. And that goes for all aspects of life, not just medicine.

As far as Facebook’s general MS support groups are concerned, they’re much better than groups purporting to dispense reliable medical info. Still, for support and camaraderie, I personally prefer some of the online MS communities listed above.

I hope WK readers find this roadmap to the MS Internet useful. If I’ve missed any sites that are your personal favorites, please let me know about them in the comments section of this post.

As is my predilection, I’ll leave you with a little musical ditty reflecting my feelings on much of the medical info that can be found on Facebook: “Beware,” by the great Louis Jordan. Yes, some of the sentiments expressed in the lyrics are archaic, but remember, the song was written over 60 years ago and was just meant to be fun. This is a classic example of the “Jump” genre of music, sometimes also called “Stomp,” which was a direct precursor to early rock ‘n’ roll…

10 comments:

Very well put together, Marc. A lot of good resources to explore. When I was first dx in 2002 I would regularly visit Cowboy's MS News, created by a guy named Paul Jones. Not sure how he's doing as everything on the site has been archived for some time now. It's still a pretty comprehensive site for its age though.

I wish I could be as balanced and eloquent when discussing problems of veracity of data with misinformed persons promulgating bad information. Thank you for your thoughtful insights.

I was diagnosed in 2000 when there was minimal Internet information. I am so grateful to people like you, Marc, that point us in the right direction. Following some of the sites already, like Barts, but signed uo for others you suggested.

My wife was diagnosed with MS last year so I have been combing the internet for accurate and useful sites for a long time. I find it very encouraging that my go to sites are the same as yours. I have read your posts on Barts from time to time so it feels like a small community.

I wanted to point a few sites out that I also follow regularly and wanted to get your thoughts on them:

MS Translate often has some unique perspectives and interviews: https://m.facebook.com/MStranslate?fref=ts

Health Care Journey has real dr's answering real questions that I often have. Its a good way for me to see if the advice we are getting at our dr lines up: http://www.healthcarejourney.com/q--a-for-virtual-ms-center

The MS Center videos (Rocky mountain center). These are one of the resources I find most useful. https://www.youtube.com/user/TheMSCenter/videos Here are two specific ones worth watching, tell me if you dont learn something:https://www.youtube.com/watch?v=J4prsO-FDzs&t=5shttps://www.youtube.com/watch?v=Su8CXsxFmL8&t=1697s (yes its 3 hours long)

MS Unites has sessions for CME credit which I think other Dr's watch, but I find them very helpful still http://www.msunites.com/ Here is one in particular that will ring a bell :) http://www.msunites.com/ms-cme-highly-effective-disease-modifying-therapies-for-multiple-sclerosis-professor-giovannoni/

And since my wife follows OMS we would normally check: https://overcomingms.org/news-research/news/ To your point regardless of if you follow OMS its probably good to be hearing what others are thinking in the field. I feel George Jelinek really tries to provide insight thats useful or at least different, for instance he does intermittent fasting himself.

Lastly its hard to get news from conferences like ECTRIMS easily because much of the content isnt shared. I usually download the app and look at all the various sessions that are interesting and make it a point to look up what I can on those. However MS world https://www.youtube.com/channel/UCftHz0qkg_V_5x6D8jY5Lxg does a good job interviewing many of the popular speakers after the session while the conference is going on.

Sorry it's taken a while to respond. I think all of the sources you linked to have value, and I'm impressed with your dedication for seeking the answers you need for your wife.

I must admit, I'm not a huge fan of OMS, but only because I think some of the MS diet gurus dough out a bit of false hope for many MS patients. Not that diet and lifestyle changes can't be helpful – they absolutely can be – but for the vast majority of patients diet and lifestyle changes alone aren't the powerful elixirs their proponents purport.

I regularly see a naturopath who specializes in treating MS patients, so I definitely appreciate this medical modality. However, only those patients with the most benign forms of the disease will be able to keep their MS completely at bay using dietary means. I have received far too many notes from people labeling themselves "failures" because, despite fastidiously adhering to one diet or another, they have seen their disease they worsen. Of course, they are not failures, and neither are the diets per se, it's only that MS is a many faced beast, and a one-size-fits-all solution is nonexistent.

Thank you so much for sharing! I was Diagnosed with RR in 99. Remember jooly's Joint? For those of you who don't this was the communication source back then for me. FB no way. Too many view points. I agree that there are many reputable sites to get info!I am using a cane but pool therapy and land therapy should help. Another back surgery. Stretching is very important I have found. It is so different for everyone. Good luck to everyone with our MS. :) Thank you again for your marvelous writing. I will follow and keep up.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...